Mistakenly called vegetative, Belgian now communicating

But some skeptical of claim

Posted: Wednesday, November 25, 2009

By RAF CASERT

BRUSSELS - Helped by a therapist, Rom Houben's outstretched finger tapped with surprising speed on a computer touchscreen, spelling out how he felt "alone, lonely, frustrated" in the 23 years he was trapped inside a paralyzed body.

After a doctor found he was wrongly diagnosed as being in a vegetative state, and worked out a way for him to communicate, Houben said he now feels reborn.

"And just like with a baby, it happens with a lot of stumbling," the 46-year-old Belgian wrote, tapping out the words in Dutch for Associated Press Television News on Tuesday as an aide guided his hand.

A leading bioethicist, however, expressed skepticism that Houben was really communicating, saying the responses seem unnatural for someone with such a profound injury and an inability to communicate for decades.

Injured in a car crash in 1983 when he was 20, Houbon was diagnosed as being in a vegetative state, though doctors now believe he was conscious the whole time.

An expert using a specialized type of brain scan that was not available in the 1980s says he finally realized Houben was suffering from a form of "locked-in syndrome," in which people are unable to speak or move but can think and reason, and provided him with the equipment to communicate.

Now, assisted by a speech therapist who moved his finger letter-by-letter along a touch-screen keyboard, Houben says years of being unable to move or express himself left him feeling "alone, lonely, frustrated, but also blessed with my family."

"It was especially frustrating when my family needed me," wrote Houben, who says he heard his father died during that time, but was unable to show any emotion.

The therapist, Linda Wouters, told APTN that she can feel Houben guiding her hand with gentle pressure from his fingers, and that she feels him objecting when she moves his hand toward an incorrect letter.

Despite the occasional typo, the responses seemed fluid and conversational Tuesday. Suffering from a cold, he opened the interview by typing out, with the help of his therapist: "You catch me at a bad moment, I have looked better."

Dr. Steven Laureys of Belgium's Coma Science Group, whose testing uncovered Houben's misdiagnosis three years ago, says he has discovered some degree of consciousness using state-of-the-art equipment like PET scans on other patients and looks at about 50 cases from around the world a year.

But none are as extreme as that of Houben, who was fully conscious inside a paralyzed body. Many center on the fine distinction between a vegetative state and minimal consciousness.

Arthur Caplan, a bioethics professor at the University of Pennsylvania who has had no direct contact with Houben or personal knowledge of the case, said he is skeptical of Houben's ability to communicate after seeing video of his hand being moved along the keyboard.

"That's called 'facilitated communication,' " Caplan said. "That is Ouija board stuff. It's been discredited time and time again. When people look at it, it's usually the person doing the pointing who's doing the messages, not the person they claim they are helping."